To Hell and Back: Part 3, Rising From the Ashes

The following 18 months or so after returning from Colorado continued to be very difficult. We almost lost him numerous times. The ambulance rides and hospital admissions seemed like they would never end. But they did. Things gradually improved as we worked very closely with his specialists implementing numerous changes and following protocol for his adrenal suppression. It is a second full-time job researching his conditions and keeping up with his appointments, meds, and his feeding regimen; but we are in a totally different place now (April 2016). His health has improved dramatically. His asthma is under control, he appears to be on his way to a full recovery from adrenal suppression, his EGE is manageable with the elimination diet, he is eating and growing, and his overall health is stable. His last hospital admission was over a year ago. We still struggle, obviously, but compared to where we were this feels like heaven.

You’re going to think I’m crazy for saying this, but the trip to Colorado left me feeling more reassured than ever. The start of something amazing happened on that wind-battered drive home in the dark. It has played out (and is still) over the years since. While driving through that eerie sea of blinking red lights of the wind fields, a realization washed over me. It’s as if the weirdness of the entire week had finally peaked. I was consumed by overwhelming reassurance that no matter what, we would be OK. I didn’t know if my son would even survive, but I knew if we did lose him, although it would be awful we would ultimately be OK. I certainly didn’t give up on him, but I gave up trying to control all the things I never really could. I gained acceptance. Shit happens. And sometimes there’s A LOT of it. Sometimes lightning does strike twice; sometimes is strikes a dozen times. But if we could deal with everything that had happened to us up to that point, there was nothing we couldn’t handle.

Last fall I was hit with a surge of creative energy, and it’s still with me! I began writing/blogging again and have started notes for a variety of books. I also restocked my art supplies and started experimenting for the first time in over a decade. I picked up my camera again. I’m playing the piano after a 25-year hiatus. My children are seeing me express myself and are joining in. We work on art projects together. We make music together. We bake allergy-friendly treats and post pictures online. They see me going out with their daddy and out with my friends, something we weren’t able to do 18 months ago because we couldn’t leave anyone alone with our medically fragile child. Life is fun again, and we’re all experiencing it more fully.

My husband and I joked about the fact that Colorado is ruined for us, which is unfortunate because it was such an easy, convenient vacation destination. Then several months ago, my parents approached us about a family trip to Colorado Springs this summer. Admittedly, we hesitated. This would be the first family vacation for us since our trip to Denver in 2013. This particular trip will be an extended family vacation to include my parents, my brother and his girlfriend, and our family of four. We feel like our son is finally stable enough to travel, and I’m on this seizing opportunities kick, so we agreed to go. My mother booked the rental house. We’re going.

A couple of months ago, I stumbled across Adele’s US tour schedule. I did a double take when I noticed she will be performing at the Denver Pepsi Center in July while we are only an hour away in Colorado Springs. I cannot express how unusual it is for me to react the way I did. I’m not one to fangirl over anyone – accept Adele, apparently. My heart started pounding with anticipation at the mere possibility of going to the concert. Adele’s 25 album was released a couple of months after my creative surge began. Her music, interviews, and shows have had a presence in my daily life ever since. My boys have even fallen in love with Adele. I instantly took to social media to hash it out in public. My question was: “…how irrational do I want to let myself be?” Instant and overwhelming feedback from family and friends provided me the reassurance needed to purchase two tickets. My brother’s girlfriend will be my date.

Because everyone is fascinated with Adele, people are always interested in how I came upon these two tickets to her sold-out show. My brief explanation is always: I’ve had a rough few years. I’ve decided instead of trying to control everything, it’s better to seize opportunities as they present themselves. And, you know, life is precious; I don’t want to have any regrets. So I bought tickets on StubHub. I’m going to see Adele. I’m also thinking about getting a tattoo.

In case you missed the link to “My One-Sided Relationship with Adele” in Part 1, you can read it here.

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What a read. It’s stories like yours that make me realize I have nothing in the world to complain about. I’m so glad your son is doing better and that you’re getting your creative vibe back. You actually have inspired me to listen to some Adele today. What tattoo would you get??

Thanks so much. He’s doing very well these days. It’s such a a relief. And it’s good to gain perspective in our lives, but we all have struggles. There’s no competition for who has a harder life. 🙂 I haven’t drawn my tattoo yet, but I want several elements represented in one design because I have a LOW pain threshold and I’m pretty certain I’ll never go back for another one! It’ll be a challenge to include everything that’s important to me without getting too large because of – well, the pain factor. 🙂 I want it to be symbolic of strength, family, faith, & creativity. (LOVE your blog, btw! I totally connect with your writing voice and your topics.)

Sounds like a great idea, and I love that you’re designing it yourself! I have two tattoos and I can definitely relate on the low pain threshold. Pending placement, it either hurts like a son of a B or it’s just annoying and you want to swat the tattoo artists hand away. I’m sure that…helps zero percent, haha. That’s what I’m hear for, making things worse for everyone 🙂

Thank you so much for sharing. I feel like I understand a missing piece to the puzzle. I love to read your stories and see what blooms from such challenges your family has been faced with on this journey called life.

As parents of an Autistic child we can very much sympathize with the “second full-time job” aspect of raising a challenged child. So happy things are starting to turn around. Ours is 23 and he’s still a challenge. 🙂